August 11, 2019 at 11:36 am #1802419yr old Twins newly diagnosed with FHSD
My 9 year old identical twin boys have just been diagnosed with FHSD. We are very worried for what the future might hold and all the support /advice we can find is geared to teenagers or adults with the condition ( as early onset is rare). Does anyone else have younger children with this condition? How did you explain it to them? We’ve joined the FHSD Facebook group but again, it all seems to be adults on there. Any advice greatly appreciated. ThanksKerrySParticipantPosts: 0Joined: 01/08/2019August 11, 2019 at 12:39 pm #180242Reply To: 9yr old Twins newly diagnosed with FHSD
Hi Kerry, it may be that we do not have other members in your position but some issues crossover with other types of MD.
I have UCMD and was diagnosed with a more general CMD diagnosis aged 5. I’m trying to remember how my Parents explained things to me. It seemed to happen quite gradually and naturally. I knew some of my muscles didn’t work like other kids’ muscles. I was younger than your children and things were noticeable from the age of 2 in terms of symptoms so I didn’t really know a different way of being.
Hopefully you can get some support from other parents who have been there. The best piece of advice I was given was from a course tutor when I was worried I wouldn’t be able to manage a classroom as well as the other trainee teachers. He said “just do it the Sarah way”. I think that is the key to getting a handle on disability – you can do so many things, you just work out another way to do them.
Keep in touch. All the best to you and your family.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015August 11, 2019 at 1:36 pm #180245Reply To: 9yr old Twins newly diagnosed with FHSD
I have one child who was diagnosed with FHSD when he was a teenager. That was the time I was diagnosed too. However, with that beautiful thing called hindsight it was clear that he had it when he was a baby, but I like many others, had never heard of it so it was ignored until a paediatrician saw him and recognised it straight away. Clearly, over the years it has caused him problems as expected, and it also caused him initially to look around for ‘blame’. As I had been diagnosed concurrently, the ‘blame’ lay with me. He never really had much problem with the condition at school, but clearly there were some problems in PE and swimming. However, he is now a very successful computer technician, programmer and website builder. He has bought and paid for is own house, and he is not yet 40. He uses his condition as his ‘handle ‘ on the interweb, and is no longer bothered or concerned with it, he just gets on with life. But the comment above “just do it Sarah’s way” is an excellent summation of what I would suggest too. All of my children , with or without the condition, have been encouraged to be different, not to follow the pack, not be a sheep (although my youngest daughter is a farmer), and I would say exactly the same to tell your own children.
Yes they have a condition, yes the condition will cause problems, but they can have an amazing future. But I would also add that you must be honest with them. Tell them the truth and discuss with them how they feel about things. Don’t bring into the conversation things like pain or disability. They may or may mot happen, I did not get affected until I was 50+, and I am still going strong doing voluntary work and as a professional drone pilot.
Their future may be different to children who do not have FHSD, but it does not have to be disappointing. On a personal note I would want to feel optimistic about their future. So much work is being done by clever people researching the problems and how to eradicate them. in the meantime there is much help and support not just from the communities here and elsewhere but also in terms of what there is to help them along the way. Above all if you and your family are optimistic and supportive they cannot go wrong. There may well be bad times ahead too, dont get me wrong, perhaps when their friends make fun of them or they are bullied. It may or may not happen, but they will quickly discover who are their true friends and the others can be ignored.
You have not said how they are affected at the moment, or what is happening to help them. it would be really useful to know so the good folk here can help in more definitive ways. Personally I would ensure that they are getting the appropriate physio as for me that has been the best thing that has happened to help.
Please do come back to us and let us know about progress.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015August 11, 2019 at 3:38 pm #180247Reply To: 9yr old Twins newly diagnosed with FHSD
Thank you both so much for replying and for your support. It’s wonderful to hear how well you and your son are doing mike and to hear how much independence you have Sarah. My boys were diagnosed as moderate/severely deaf shortly after birth and have had hearing aids since they were 8 weeks old. We’ve always had lots of medical appointments and SALT intervention as a result but around the age of 7, they started to really struggle to gain weight and one started having some mobility issues with his hip. They both fatigue very quickly and get muscle pains. They’ve always had issues with facial movements and our audiologist & SALT helped us push hard to get back to a neurologist to find out what might be causing it and the other newer problems. Unfortunately, he was very dismissive and brushed it off. Cue another year of fighting for a diagnosis until we finally got the genetics results and a decent neuromuscular consultant at alder hey confirmed fshd last week. We’d never heard of it so it came as a big shock. We’ve always known they might not achieve in exactly the same way as other children but have encouraged them to believe they’ll get there in the end, they might just have to take a different route to do it! I love the advice you were given Sarah – I’ll def be encouraging them to do anything they want to do, their own way. We also have a 12 year old daughter and we’re like you Mike – we encourage them all to follow their own paths , not necessarily the crowd. My boys are both good at maths , enjoy gaming and have just started to learn code so it may be they decide to follow a similar path to your son in future. And if they decide to do that or something else, we’ll be right behind them cheering them on and supporting them in any way we can. I’m still optimistic that they’ll grow up to have happy, fulfilling lives and don’t need to be defined by this diagnosis. It’s really good to know that there are others we can reach out to via this forum for support and advice, thanks again. Kerry xKerrySParticipantPosts: 0Joined: 01/08/2019
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